ObjectiveTo present (1) the ethical concepts related to the debate on resuscitation of extremely premature infants (EPIs) as they are described in the ethical literature; and (2) the ethical arguments based on these concepts.DesignWe conducted a systematic review of the ethical literature. We selected articles based on the following predefined inclusion/exclusion criteria: (1) English language articles (2) presenting fully elaborated ethical arguments (3) on resuscitation (4) of EPIs, that is, infants born before 28 weeks of gestation.AnalysisAfter repeated reading of articles, (...) we developed individual summaries, conceptual schemes and an overall conceptual scheme. Ethical arguments and concepts were identified and analysed.ResultsForty articles were included out of 4709 screened. Personhood, best interest, autonomy and justice were concepts grounding the various arguments. Regarding these concepts, included authors agreed that the best interest principle should guide resuscitation decisions, whereas justice seemed the least important concept. The arguments addressed two questions: Should we resuscitate EPIs? Who should decide? Included authors agreed that not all EPIs should be resuscitated but disagreed on what criteria should ground this decision. Overall, included authors agreed that both parents and physicians should contribute to the decision.ConclusionsThe included publications suggest that while the best interest is the main concept guiding resuscitation decisions, justice is the least important. The included authors also agree that both parents and physicians should be actively involved in resuscitation decisions for EPIs. However, our results suggest that parents’ decision should be over-ridden when in contrast with the EPI’s best interest. (shrink)

BackgroundDeciding whether to resuscitate extremely preterm infants (EPIs) is clinically and ethically problematic. The aim of the study was to understand neonatologists’ clinical–ethical decision-making for resuscitation of EPIs.MethodsWe conducted a qualitative study in Belgium, following a constructivist account of the Grounded Theory. We conducted 20 in-depth, face-to-face, semi-structured interviews with neonatologists. Data analysis followed the qualitative analysis guide of Leuven.ResultsThe main principles guiding participants’ decision-making were EPIs’ best interest and respect for parents’ autonomy. Participants agreed that justice as resource allocation (...) should not be considered in resuscitation decision-making. The main ethical challenge for participants was dealing with the conflict between EPIs’ best interest and respect for parents’ autonomy. This conflict was most prominent when parents and clinicians disagreed about births within the gray zone (24–25 weeks). Participants’ coping strategies included setting limits on extent of EPI care provided and rigidly following established guidelines. However, these strategies were not always feasible or successful. Although rare, these situations often led to long-lasting moral distress.ConclusionsParticipants’ clinical–ethical reasoning for resuscitation of EPIs can be mainly characterized as an attempt to balance EPIs’ best interest and respect for parents’ autonomy. This approach could explain why neonatologists considered conflicts between these principles as their main ethical challenge and why lack of resolution increases the risk of moral distress. Therefore, more research is needed to better understand moral distress in EPI resuscitation decisions.Clinical Trial Registration: The study received ethical approval from the ethics committee of UZ/ku Leuven (S62867). Confidentiality of personal information and anonymity was guaranteed in accordance with the General Data Protection Regulation of 25 May 2018. (shrink)

Romanis and Adkins discuss pregnancy loss in relation to artificial amnion and placenta technology (AAPT) for treatment of extremely preterm infants.1 I agree with the authors that AAPT, although it is expected to provide better care for extremely preterm infants, will also be challenging for parents. I, therefore, commend Romanis and Adkins for promoting a more holistic care that includes parents and pregnant persons. However, I believe that they create two false dichotomies, one between the pregnant person/parent and the fetus/child (...) and one between current neonatal intensive care unit (NICU) and AAPT that hinder holistic care. Romanis and Adkins correctly point out that much of the discourse and care surrounding preterm deliveries focuses mainly on the infant. I agree with Romanis and Adkins that true holistic care should also include the parents rather than focusing exclusively on the child. However, the language they use to petition for more inclusive care can be problematic and counteractive to achieve holistic care. The problem is that they accuse any fetal/child consideration of being fetal-centric and, in the same breath, they state that it is something to be challenged. This attitude is problematic as it feeds into the rhetoric of the maternal–fetal conflict. This is a common rhetoric in reproductive and neonatal care used mainly in situations …. (shrink)

In “Ethical Responsibilities for Companies that Process Personal Data” McCoy et al. (2023) proposed three substantive principles that should underlie corporations’ treatment of data: minimizing har...

In her article Reification and assent in research involving those who lack capacity, Anna Smajdor shows how excluding adults with impairments of capacity (AWICs) to protect them from the risks of medical research has the paradoxical effect of harming them by reifying them.1 While the medical risks of excluding vulnerable populations in general from medical research are well known, the main risk being the creation of therapeutic orphans, the risk of reifying these populations is less discussed. Hence, we commend Smajdor (...) for introducing an essential nuance in the debate on inclusion of AWICs in medical research. We also agree with her on the importance of acquiring assent from those who cannot legally consent rather than automatically excluding them from research, as we already do in paediatric research. However, we believe that she fails to acknowledge some practical challenges already observed in paediatric research that hinder the retrieval of assent from AWICs and, consequently, their inclusion in medical research. In this commentary, we will first introduce the main challenge to using assent to include AWICs in research, that is, the fact that individuals might oscillate within the capacity spectrum. We will then provide other examples of practical obstacles to the inclusion of AWICs …. (shrink)

In their article “Postponed withholding: Balanced decision-making at the margins of viability,” Syltern et al. (2022) present an interesting solution to an important and still unsolved issue in neo...

The COVID-19 pandemic has had, and still has, the risk to have an enormous impact on how people socially interact with each other due to possible lockdowns, quarantine and isolation measures to reduce infection rates. Consequently, these measures hold great implications for those medical disciplines that inherently rely on social interaction, such as psychiatry. In their article, ‘Can you hear me?’— Communication, Relationship and Ethics in Video-based Telepsychiatric Consultations’, Frittgen and Haltaufderheide1 show that videoconferencing holds potential to ensure that this (...) social interaction is guaranteed, be it in a technology mediated manner. In this sense, videoconferencing needs to be conceived as a pharmakon, a medicine, having both curative and toxifying elements, depending on why and how it is used.2 For example, videoconferencing allows continuity of care when physical proximity is impossible. At the same time, it allows the patient to interrupt the therapy by muting the therapist or ending the call at his/her convenience. To guarantee the curative side of videoconferencing, and as such avoid the toxifying elements, an ethical prescription needs to be developed and used. Despite the fact that videoconferencing seems to have a similar clinical effectiveness as face-to-face interaction, Frittgen and Haltaufderheide rightly point out that there are ethical impacts to be addressed to avoid …. (shrink)

Objective: To examine i) how ethical frameworks can be used in concrete cases of parent–doctors’ disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. Design: We did a case analysis of a concrete case of parent–doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion. Results: Both ethical frameworks entailed similar advantages and challenges. (...) They have the potential 1) to facilitate decision-making because they follow a structured method; 2) to clarify the situation because all relevant ethical issues are explored; and 3) to facilitate reaching an agreement because all parties can explain their views. We identified three main challenges. First, how to objectively evaluate the risk of severe disability. Second, parents’ interests should be considered but it is not clear to what extent. Third, this is a value-laden situation and different people have different values, meaning that the frameworks are at least partially subjective. Conclusions: These challenges do not mean that the ethical frameworks are faulty; rather, they reflect the complexity and the sensitivity of cases in the grey zone. (shrink)

De Bie et al. (2023) found that most feminist literature praises Artificial Womb Technologies (AWT) for its potential to increase equality among the sexes. This literature frames gestation as a poi...

Artificial placentas (APs) are technologies that mimic the human placenta to treat extremely preterm infants. Being an invasive and risky technology, it will raise important ethical questions for human trials. Hence, in this Topic Piece we provide a blueprint of further issues to investigate. First, counselling will have the double role of providing trial information as well as (non) treatment counselling. This requires extra training and the development of ad hoc decision aids to support counselling and parents’ decision-making. Second, more (...) stakeholder involvement is needed. Direct stakeholders, such as parents, clinicians, and researchers, can help develop the decision aids and provide insight on potentially overlooked issues. Society should also be involved to determine whether AP trials and implementation should be subsidized, and the ethical implications of not subsidizing. Third, a proper cost-benefit analysis should be conducted to determine the exact cost of the technology. (shrink)

Maternal fetal surgery (MFS) trials have the potential to substantially increase the survival and quality of life of fetuses with life-threatening conditions, but they also entail relevant and yet overlooked fair access challenges. In this topic piece, we will present the fair access concerns in MFS trials/practice and their ethical ramifications as well as some possible ways to address them. The most obvious challenge is cost. Although the cost of the surgery itself is generally covered, costs are high for participants, (...) including commute or housing near the hospital. This might hinder participations of parents from lower economic status. Strict eligibility criteria aimed at protecting participants further limit accessibility. These issues further affect the scientific validity of the trial. For example, the above-mentioned issues contribute to difficulties in recruitment which already lead to MFS trials delays and cancellations. They also contributed to homogeneous samples that are difficult to generalize. Hence, it is important that researcher first acknowledge the existence of fair access issues beyond those related to the cost of the surgery itself and that these issues affect participants’ right to fair access to the trial benefits as well as the scientific validity of the trial. Second, it is important that researchers actively try to foresee and reduce these issues. (shrink)